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Hello! Long time lurker, first time poster, mom to a 6.5 y/o PANDAS boy with a question about food restriction/anorexia. I've read a lot here (esp from beerae22 who seems to have been on a similar journey with her DD) and it's been soooo reassuring to know that we're not the only ones out there dealing with this. In a nutshell, DS had an abrupt onset of typical PANDAS symptoms in February 2014. With prompt antibiotic treatment (mostly Rocephin injections - he would take nothing by mouth), most symptoms went away (or decreased so that his level of functioning was no longer greatly impaired). The only residual symptom was the severe food restriction. At the worst point, DS would only consume McDonald's vanilla milkshakes (no toppings! perfect temperature!) and popsicles. Thankfully, I was able to find a paper online that had been co-authored by a doctor who works at an eating disorder clinic within driving distance that treats "food phobia." We got him into their partial hospitalization program in July where he was on a moderate dose of olanzapine and a feeding tube was placed. After about a month, the program did its "magic" and DS was eating like a little piggy! He gained 10 lbs during August! During the past few weeks, we've seen him starting to restrict again. Things really amped up after a relatively mild virus (a bit of vomiting and fever for ~24 hours then diarrhea for a few days). He's eating practically nothing during the day, and has stopped eating several staple foods. While he is still doing the "bite, chew, swallow" and eating solids and crunchy foods, the tics (which mostly happen while he eats) are back in a big way. He's getting messier (before treatment he would take a bath after he ate anything) and eating less in quantity. I'm getting scared. His pediatrician has him on Zithromax 500 mg three times a week as strep prophylaxis. I'm going to contact the doctors at the eating disorder program (one of whom knows Swedo a bit) to see if they can recommend someone but wondered if the parents who've been through this can offer any advice or tell me what worked for their child. In my mind, we could try different antibiotics (he won't swallow pills - grrrr) but IVIG will likely be the "big fix." Basically we've been telling the medical doctors what to do and backing it up with published research (husband is MD and I'm NP) but I don't want all of this on us - it's way over our heads. Should we consult Dr T? Dr K? We're headed on vacation to Mexico for a week and I have a feeling this might push DS back into full-blown restriction mode. Haaaaalp!!
http://online.liebertpub.com/doi/pdf/10.1089/cap.2014.0063 here's the abstract, you can read the full-text by clicking the link above Abstract Objective: Sudden onset clinically significant eating restrictions are a defining feature of the clinical presentation of some of the cases of pediatric acute-onset neuropsychiatric syndrome (PANS). Restrictions in food intake are typically fueled by contamination fears; fears of choking, vomiting, or swallowing; and/or sensory issues, such as texture, taste, or olfactory concerns. However, body image distortions may also be present. We investigate the clinical presentation of PANS disordered eating and compare it with that of other eating disorders. Methods: We describe 29 patients who met diagnostic criteria for PANS. Most also exhibited evidence that the symptoms might be sequelae of infections with Group A streptococcal bacteria (the pediatric autoimmune neuropsychiatric disorder associated with streptococcal infections [PANDAS] subgroup of PANS). Results: The clinical presentations are remarkable for a male predominance (2:1 M:F), young age of the affected children (mean = 9 years; range 5–12 years), acuity of symptom onset, and comorbid neuropsychiatric symptoms. Conclusions: The food refusal associated with PANS is compared with symptoms listed for the new Diagnostic and Statistical Manual of Mental Disorders, 5th ed. (DSM-V) diagnosis of avoidant/restrictive food intake disorder (ARFID). Treatment implications are discussed, as well as directions for further research.